Going into this journey headaches with disability

SpeedyMarie

Member
Joined
May 24, 2019
Messages
14
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
Hello all,

I was diagnosed in August of this year and have been having symptoms for probably a year before. In my career due to my illness I just can’t do it anymore. Being a nurse the physical demands and my hand and arm weakness was making it difficult doing simple procedures. Fear of losing my benefits (job)and the out and out extreme fatigue, I went to my PCP. He recommended doing out on disability. 25 years as a nurse ....end of a career. Sucks and has been emotional but I have peace. I would never want to hurt someone. My family and friends need me and damn it I’m going to do my art while I still can -so life will open in a different way.
I swear dealing with doctor offices and tracking forms, insurance policies and paying for forms to be filled out wow. I’m starting a spreadsheet. I have a meeting with my lawyer for estate planning and will today. Next month I’ll be eligible to apply for Medicare and SSI. Hopefully in a few months my insurance through Medicare will allow me to go to an ALS Clinic. I’ve heard stories from various times being in health care how bad is the Compassionate SSI process?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,714
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
You mean ssdi right? Make sure your paperwork is marked TERI. It should go pretty smoothly if your ALS diagnosis is documented and you have stopped work and aren’t returning. You don’t need to wait until the five months are up to apply

You may quickly get a letter denying ssi. Don’t freak. Ssi is a program based on financial need. It is routine to assess this with an ssdi application. Your ssdi approval should follow soon after

Sorry about the loss of your career. I know it is hard
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
14
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
Yes, SSDI thank you for those tips. I have short term and long term disability from work. It’s documented ALS/FTD though my PCP said the ALS what is presenting. I’m certain I would qualify I wish I had the bank account that would prevent that lol
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,714
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
There is no financial need qualification for ssdi. Recent work credits , stopped work and a disabling diagnosis and for fast track a TERI illness

If you think you qualify for ssi too you could look into it but I think your disability income from work alone would disqualify you
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
201
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
I am sorry for your diagnosis but glad to welcome you here.

As far as SSI Disability/Medicare for ALS, I found the staff not always 100 percent informed, but very helpful and caring once information and a plan of action was determined. Be insistent that your diagnosis qualifies you for immediate/compassionate route. I was told to wait until I had no more earned income (no longer employed), then apply using the online application which is lengthy and quite involved. If you call your local SS Administration, they can help you and even set up a phone or personal appointment. Once my application was submitted, I was told SSI Disability could be approved and start within days. (I was not eligible for Disability due to never paying into SS, so cannot comment if this is accurate) Have all the dates and lists of doctors and procedures and tests. Unfortunately Medicare still will have a shortened waiting period of 5 months. If typing is difficult for you, have someone help you with the online application.

Do you not have any insurance at this time? I only ask because of the need to get started with ALS clinic as soon as you are able. I personally wouldn't wait for Medicare. You will find lots of help with a variety of issues.

I would also recommend contacting your local ALS Association chapter. Lots of help and information will be available to you from them.
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
14
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
Thank you both Nikki and blitzc.

I’ve been in contact with my local ALS chapter unfortunately I missed the monthly meeting. Currently we are having a weather event in Houston with flooding. I’d rather not bother them I imagine other folks need more help than me at this time. In my area there are two ALS Clinics. The Hospital system I work for ( on FMLA now ) is not a part of either the ALS Clinics. My insurance covers only Hospital system doctors and other providers so I’m locked out from the ALS Clinics. It would be nice to talk to a social worker and such for this stuff
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
201
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
You can talk with a social worker via phone or email through the ALS Association. They will even make a home visit if you like-after the flooding concerns subside. This is where my social worker is affiliated.

I too, like so many of us, are dealing with the loss of a career. Please know you are among friends here with similar concerns. 🤗
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,421
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Sorry you are here but there is much help and support.

I had to leave work because I lived alone and had to do all the paperwork myself plus take care of my brother (who is 20 years older) when I was first diagnosed. I had planned to work one more year (I was a full-time college professor designing and teaching online courses) but the stress of my brother getting sick, my friend being hospitalized for a cardiac event and the college pushing me to take on more classes stressed me out to a level I knew was not healthy. It all worked out. I also had STD (accumulated over six months sick leave) and LTD until age 66. I applied for SSDI the day I knew was my last day at work. Had two neurologists write letters and was approved in two weeks. I sent all my test results to back up the doctors' letters. I was still on the college's insurance and it was a rich plan. They kept me on the payroll until my sick leave ran out but, since I wasn't working, my SSDI kicked in even before I was officially retired.

You'll need to get a supplemental insurance policy to cover the 20% for equipment that Medicare doesn't cover. Also a Plan D for your drugs. Since the college plan was so good, I got some extra medication before terminating and used all my flex money to get other necessities.

Your LTD plan administrators will help you get SSDI, if necessary because LTD is usually offset by SSDI.

You will find new purpose once you are no longer working for awhile. I ended up moving to the beach and finding new friends.

Just be careful and get plenty of sleep, don't fall (I did and it cost me six months of not walking), and eat good food and drink lots of water. Get all the blood work you can while you're still under the hospital insurance. Get a comprehensive pulmonary function test so you'll have a baseline from which to go.
 
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